POEMS syndrome is a rare disorder of the blood that affects many of your body systems and causes damage to your nerves. POEMS syndrome may occur because of the growth of certain bone marrow plasma cells (clonal plasma cells) that produce an abnormal amount of blood proteins, which damage body organs.

POEMS is an acronym for the syndrome's most common signs and symptoms.

  • Polyneuropathy: Nerve damage causing numbness, tingling and weakness of the hands and feet.
  • Organomegaly: Organ enlargement of liver, lymph nodes or spleen.
  • Endocrinopathy: Abnormal hormone levels.
  • Monoclonal protein: A collection of abnormal blood proteins (immunoglobulins) made from bone marrow cells called plasma cells; also called monoclonal immunoglobulin.
  • Skin changes: Increased skin pigment, increased body hair, thickening of the skin and whitening of the nails.

Other features may also be present in POEMS syndrome, such as high platelet counts and blood clots.

  • Expertise and experience. POEMS syndrome is rare and diagnosis can be difficult. Mayo Clinic doctors see many people with this disease each year and have been treating the disease for more than 35 years.
  • Multispecialty team. Mayo Clinic has a designated group of specialists, the myeloma treatment group, which focuses on treating diseases such as POEMS syndrome. Working together, Mayo Clinic specialists develop a treatment plan based on your specific needs.
  • Excellent transplant care. In some cases, people with POEMS syndrome require a peripheral blood stem cell transplant. Mayo Clinic transplant centers are leaders in exploring the use of transplants to treat POEMS syndrome, with one of the largest and most experienced transplant practices in the United States.
  • Newest research. Mayo Clinic has been doing extensive research on POEMS syndrome for many years to help improve diagnosis and treatment options.

At Mayo Clinic, we assemble a team of specialists who take the time to listen and thoroughly understand your health issues and concerns. We tailor the care you receive to your personal health care needs. You can trust our specialists to collaborate and offer you the best possible outcomes, safety and service.

Mayo Clinic is a not-for-profit medical institution that reinvests all earnings into improving medical practice, research and education. We're constantly involved in innovation and medical research, finding solutions to improve your care and quality of life. Your doctor or someone on your medical team is likely involved in research related to your condition.

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A team of specialists at Mayo Clinic in Arizona works together to identify the appropriate treatment approach for you. Your team may include specialists from hematology, neurology, physical medicine and rehabilitation, radiation oncology, endocrinology, and others if needed.

For appointments or more information, call the Central Appointment Office at 800-446-2279 (toll-free) 8 a.m. to 5 p.m. Mountain Standard Time, Monday through Friday or complete an online appointment request form.

A team of specialists at Mayo Clinic in Florida works together to identify the appropriate treatment approach for you. Your team may include specialists from hematology, neurology, physical medicine and rehabilitation, radiation oncology, endocrinology, and others if needed.

For appointments or more information, call the Central Appointment Office at 904-953-0853 8 a.m. to 5 p.m. Eastern time, Monday through Friday or complete an online appointment request form.

A team of specialists at Mayo Clinic in Minnesota works together to identify the appropriate treatment approach for you. Your team may include specialists from hematology, neurology, physical medicine and rehabilitation, radiation oncology, endocrinology, and others if needed.

For appointments or more information, call the Central Appointment Office at 507-538-3270 7 a.m. to 6 p.m. Central time, Monday through Friday or complete an online appointment request form.

See information on patient services at the three Mayo Clinic locations, including transportation options and lodging.

Mayo Clinic emphasizes a thorough evaluation using the latest testing options to diagnose POEMS syndrome. To make a diagnosis, your doctor first performs a physical exam and reviews your medical history. Diagnostic tests may include those below.

Imaging tests

Mayo Clinic has an international reputation for top-quality imaging and rapid test results. In tests that involve radiation, specialists carefully monitor doses to avoid the risk of radiation overexposure. Your doctor may recommend imaging tests, including:

Lab tests

Mayo Clinic's pathologists are internationally known for their expertise in assessing biopsy and other samples, including urine, bone marrow and blood.

  • Blood tests. To assess your blood cells, protein and hormone levels, your doctor may recommend blood tests.
  • Biopsy. Your doctor may remove a small sample of tissue, bone marrow or abnormal bone growths for examination by a pathologist.
  • Bone marrow tests. The pathologist will carefully review your bone marrow under the microscope looking for features of the disease, and may do special stains called immunohistochemistry to better highlight if there are monoclonal plasma cells in your bone marrow.
  • Other tests. Lung (pulmonary) function testing and urine protein testing also may be done.

Consultations

Because POEMS syndrome can affect so many different parts of the body, your doctor may request that you see other specialists to assist in managing your symptoms. These specialists may include hematology, neurology, physical medicine and rehabilitation, endocrinology, radiation oncology, ophthalmology, and others as needed.

Read more about CT scan, PET scan and biopsy.

Although POEMS syndrome is rare, Mayo Clinic doctors see many people with this disease each year. Treatment for POEMS syndrome depends on its stage and severity. A multispecialty team of doctors at Mayo Clinic combines their expertise to develop the appropriate treatment plan for your needs. Your treatment team may recommend one or more of the following treatment options.

  • Chemotherapy. When abnormal plasma cells are widespread, your doctor may recommend chemotherapy.
  • Peripheral blood stem cell transplant. Mayo Clinic doctors have special expertise in performing a peripheral blood stem cell transplant, using stem cells collected directly from blood, to treat POEMS syndrome. For some people, high-dose chemotherapy is given to destroy abnormal cells followed by peripheral blood stem cell transplantation.
  • Corticosteroids. These powerful anti-inflammatory drugs help subdue your body's immune response and produce extra bone marrow cells.
  • Radiation therapy. At Mayo Clinic, you have access to the most advanced radiation therapy treatment.

Other treatments

  • Intensive supportive care measures. These measures are designed to help manage and relieve symptoms of the disease. Therapies may include pain medication, medications to reduce fluid retention, foot care, and safety measures to compensate for loss of sensation or weakness.
  • Physical therapy. Your doctor may recommend physical therapy, with the possible addition of braces or walking aids, to increase your mobility if you have a disability caused by weakening of feet, legs, hands and arms (neuropathy).
  • Hormone replacement. If you're experiencing hormonal abnormalities, your doctor may develop a customized hormone replacement plan for you.

Mayo Clinic has been doing extensive research on POEMS syndrome for years. Although POEMS syndrome is rare, Mayo Clinic doctors see many people with this disease each year. This provides the opportunity to conduct research on underlying biology and to help improve diagnosis and treatment options.

Specific areas of research on POEMS syndrome include:

  • Use of chemotherapy to destroy abnormal plasma cells that produce immunoglobulin and other chemicals that harm the body
  • Development of quick-acting medications to prevent progressive organ damage
  • Use of novel agents to improve response to treatment
  • Development of methods for early diagnosis
  • The role of stem cell transplant

Publications

See a list of publications by Mayo Clinic doctors on POEMS syndrome on PubMed, a service of the National Library of Medicine.

Nov. 20, 2012